Hello, I'm Jayne, I'm in South Wales and Heart of Gold is my self funded website.
It used to be called 'Guitars 4 Good' because I also do music promotion for rock bands, but I felt the name was restrictive, and so I re-branded the site as 'Heart of Gold' - gold being the colour of the childhood cancer awareness ribbon.
An American mother whose 7 month old son was diagnosed with cancer said:
"Don’t harbor frustration or anger that retailers, celebrities and social media have forgotten all about the gold ribbon. Just focus on what you can do to raise awareness and to help others that are going through it."
You can read her whole article on the 'Don't Choose To Look Away' page.
Well that is what I am trying to do with this website and awareness raising ideas that I have - focussing on what I can do.
I feel so strongly about this matter that I want to do something, no matter how small it may seem, to help in some way ... spreading awareness of the situation, designing my 'comfort cushions' (the story of which is on the 'Cwtchy Cushions' page - cwtch being Welsh for cuddle) ... I just want to do something to help. Something to help boost the spirits of the courageous little ones. Something to make them smile for a moment.
I hadn’t heard of neuroblastoma until my attention was brought to it by a new follower on Twitter whose young daughter has the disease.
Neuroblastoma is the most common extracranial solid cancer in childhood and the most common cancer in infancy, with an incidence of around 100 UK cases per annum. 50% of Neuroblastoma cases occur in children younger than two years old. It originates in nerve tissues in the neck, chest, abdomen, or pelvis often leaving children with very little immune system and in great pain.
There are four stages of risk for Neuroblastoma Cancer Children with stage 4 being the most serious with a survival rate of between 40% and 50%.
You only have to look on Facebook and Twitter to see how many parents have had to set up pages in order to fundraise for treatment to try and save the lives of their children!
There is a drug which helps. Dinutuximab. A drug therapy that has been approved by the European Medicines Agency (EMA) and in the US by the Food and Drug Administration (FDA).
March 10, 2015
“The U.S. Food and Drug Administration today approved Unituxin (dinutuximab) as part of first-line therapy for pediatric patients with high-risk neuroblastoma, a type of cancer that most often occurs in young children.”
“The safety and efficacy of Unituxin were evaluated in a clinical trial of 226 pediatric participants with high-risk neuroblastoma whose tumors shrunk or disappeared after treatment with multiple-drug chemotherapy and surgery followed by additional intensive chemotherapy and who subsequently received bone marrow transplantation support and radiation therapy. Participants were randomly assigned to receive either an oral retinoid drug, isotretinoin (RA), or Unituxin in combination with interleukin-2 and granulocyte-macrophage colony-stimulating factor, which are thought to enhance the activity of Unituxin by stimulating the immune system, and RA.
Three years after treatment assignment, 63 percent of participants receiving the Unituxin combination were alive and free of tumor growth or recurrence, compared to 46 percent of participants treated with RA alone. In an updated analysis of survival, 73 percent of participants who received the Unituxin combination were alive compared with 58 percent of those receiving RA alone.
However, the National Institute of Health and Care Excellence (NICE) have refused to fund dinutuximab for children in the UK, with the usual reason of expense! The projected cost is £2m per annum, yes two, not twelve or twenty million, but two.
From Solving Kids’ Cancer website:
“NICE has decided to deny dinutuximab, the only treatment approved specifically for neuroblastoma”
“Whilst dinutuximab is not a cure for all, it has been shown to significantly increase the chance of survival and many children are alive today and living a full life because of this medication. The decision to refuse this drug for children in the UK is at odds with the many countries in Europe and North America where this therapy is the standard treatment for neuroblastoma nd risks pushing back advances in treatment to 2009 in the UK.
Fewer than 100 children are diagnosed in the UK each year, of which only a third would benefit from this antibody therapy. The cost to the NHS of giving children a greater chance of survival and a normal life is therefore very small, but British children diagnosed with this cancer in future would only be able to access specialised treatment by taking part in a clinical trial. This is wholly unethical when an effective drug is approved. The only other option open to parents will be to raise in excess of £500,000 to take their child abroad for treatment.”
Stephen Richards, CEO of Solving Kids’ Cancer, said:
“NICE based their decision on an annual cost to the NHS projected at just over £2m to give these children a greater chance of survival and a full and normal life. This is a miniscule amount to give some of our most vulnerable children a chance of life.”
SKC launched an appeal against the decision on July 29th, 2016.
They gave this update on their website:
“We have heard that NICE will consider one of the points we raised although they were “not minded to consider” the other aspects of our appeal. We have until 19th August 2016 to respond to the points that they do not feel they need to reconsider and we are working with lawyers, who have agreed to work with us on a pro bono basis, to put together our submission. On the point of law that they will hear, we have until 26th August 2016 to submit further information and, again, we are working hard with the legal team to prepare this. There will be a full hearing on at least this point on 30th September 2016.”
They go on to say:
“Please be assured that we will do all we can to get this decision overturned, either through the legal process or through a concerted public campaign and lobbying the government.
We will need all the support we can muster and would be grateful for any support you can offer or simply helping us to spread the word. We are currently focussed on the appeal deadlines but are already planning a campaign to run alongside this process to raise awareness of this issue and get public opinion on our side. We will keep you informed as this progresses.”
I don’t want to get into politics, suffice to say that I feel angry on top of deeply upset that the parents of these children have to fundraise to get them treatment abroad, treatment that is proven to help. Of course, like any drug, it will not suit every situation but it has been proven to work on those suitable to have the therapy.
Imagine the emotional strength and fortitude that is needed by parents to deal with this dreadful disease attacking their children and then on top of that parents have to concern themselves with raising funds to get medical help - currently £500,000! Remember, it’s not just the drug therapy cost, there’s also the cost of the hospital stay, the cost of travel, the cost of somewhere to stay for the 2 parents plus possibly a sibling. On top of all of that, the children who are sick have to endure a long journey to get the treatment.
All of that, when for around (a projected cost of) £2m a year we could give them that much needed drug therapy here in the UK!
Although neuroblastoma is the children's cancer primarily focussed on, there is also information on other rare childhood cancers such as RRT.
So yes ... anything I can do to help, no matter how small, I am going to do it!